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Wednesday, November 28, 2012

On the
Arthritis Foundation website, they have a feature called “Look Up By Body Part,” which allows you to select a body part and see what symptoms are common
in that area of the body.

I started
looking at it and I realized that for me, the question isn’t what does hurt,
but what doesn’t.

It’s
creeping in.And not slowly, I’m afraid.

Increasingly
I struggle with hours of morning stiffness, doing and undoing buttons,
maneuvering my coat on, and fastening my bra.My left ankle has been swollen for the last few weeks.I haven’t really had issues with my ankles
before, so this doesn’t make me very happy, to say the least.

I feel
like I am becoming my 86-year- old grandmother.And I mean no disrespect by that at all.It’s just incredibly frustrating and discouraging to see my body in a
constant state of flux, and not always in a good way.

I am
trying to play the “I don’t need meds game,” but I think I’m only hurting
myself at this point.

And 5mg of
Prednisone is unfortunately doing nothing for me.I wish it was.Because I hate being on steroids.And if 5 mg is doing nothing, that means I will
probably have to consider the option of increasing the dose.And I don’t really want to do that.

On a good
day, “X” marks the spot.I can easily
pinpoint one or a few areas where I am in pain.On a bad day, I can’t pinpoint the pain.It’s everywhere.And it weighs me
down.I feel like I have the weight of
the world on my shoulders, and my shoulders feel like they will collapse under
the weight of everything.

Sometimes
when I get really exhausted, I cry.Like
a four-year-old.But I’ve come to
realize that this isn’t a babyish thing.It’s frustration.That I want to keep
going, even when my body says stop.And
sometimes fighting against it works better than other times.But that’s the thing about this body.When it wants me to stop, it makes me
stop.Pain and exhaustion are hard to
fight against.

And Thanksgiving
was crazy, in a good way.We were in New
York with my boyfriend’s family.And his
brother got married the day after Thanksgiving.It was busy.And I was worried
that I would crash.But I didn’t.At least not while we were gone.But just a few hours after getting home, pain
and exhaustion hit me.This isn’t a
reflection on the week that we spent away.Overall it was pretty chill.We
didn’t go to bed super late, and we were able to sleep in.We didn’t do a ton of strenuous
activity.

It’s just
me.This is my body.It’s the way it works now.All activities cost me, whether I want them
to or not.I fared very well overall on
this trip.I think a lot of it had to do
with excitement and adrenaline.I skated
through and didn’t really have to think about it.Even though my boyfriend’s family was very
good about checking in with me about how I was feeling.

This is
just the way it is.I lucked out.For the time we were away, I felt reasonably
well.And now my body is paying me
back.You get a reprieve and then you
suffer the consequences of that reprieve.This is about checks and balances.A reprieve isn’t free.It comes
at a cost.

And I know
this.But I think this is one of the
hardest things to accept about illness – that my body has limitations that I
just can’t always fight against.

I woke up
this morning feeling pretty bad.I got
up and went back to bed three times.I
didn’t even know if I would have the energy to write this post.But here I am.

I wish I could
say that tomorrow will be great.It might be, or it might not.The reality is that I don’t know from day to
day, or hour to hour, for that matter, how I am going to feel.

And I try
not to burden other people with this.I could
complain all the time, about every little ache and pain.And there are certain people in my life who
do get the laundry list of things that aren’t working for me.But I don’t see how complaining serves me or
anybody else.I guess I do vent my
frustrations here, and maybe that is akin to complaining.But I’m not trying to be whiny.I’m just stating the facts.

Life is
hard.I have good days, and I have bad
days.It’s a good period when the good
days outnumber the bad days, less so when the bad days outnumber the good.And I’m eagerly awaiting the appointment I have
with my rheumatologist in about ten days.I wasn’t supposed to see him until February, but things seem to be
getting worse and not better and we need to figure out what the next step is
going to be.

Monday, November 19, 2012

I’m not in
a super awesome place right now health-wise.Unfortunately, my RA seems to be back with a vengeance.I’m having a lot of issues physically.

It’s hard
for me to use a knife to cut my food.My
boyfriend and I were out to dinner and I was struggling.He grabbed the plate and the knife and did
what I couldn’t do.I was
mortified.I’m 27 years old and my
boyfriend is cutting my food like I’m a four year old.

This
hasn’t happened since I first got sick.I was home for the holidays and we were having dinner, I was sitting
next to my sister, and she had to cut my food for me.

Clasping my
bra is a struggle.Sometimes managing to
get my coat on takes a ridiculous amount of time and energy.Buttons of any kind are difficult to do with
my somewhat useless fingers.

And when I
lay down, I feel like my bones are crushing in on each other.Again, I haven’t felt this way since I first
got sick.

Lying down
is so painful at times.And when my boyfriend
moves his body closer to mine, I don’t want to sound like I don’t love him, but
him being that close physically is painful for me.

I don’t
want it to be, but it is.

And he can
tell without me saying anything.And he
tells me he has an idea.He leaves the
room and comes back with two ice packs.He places one against my back and the other between my knees.

At first
I’m hesitant, not just because of the pain, but because of the physical and
emotional closeness that ensues.

It’s hard
to struggle so openly in front of the person you love.

It’s feels
vulnerable in a way that nothing else does.

And I’m
not good at accepting help.

As
frustrating as some of his quirks can be, in that moment, they don’t
matter.Nothing else matters.

He rubs
the ice pack up and down my body.Not in
a sensual way, but in a healing way.

And it
feels like heaven.Sometimes heat feels
good, but when your joints are hot and angry, heat actually hurts.

As I face
the wall, I cry silent tears.For my
pain, for being sick, but most of all, for having this amazing person next to
me who I’ll never be able to repay in kind.

No one has
ever done anything like this for me before.Not that I’ve asked.And while I
tried to protest, I immediately felt better.I slept with them (him and the ice packs) through the night.

And the
thing about it is, if this isn’t love, I don’t know what is.

Really.

But all of
the insecure illness feelings come back in a rush of anxiety.

This should
be our lives 40 or 50 years from now.Not
right now.These physical struggles
disgust me.I can’t hide them, but I so
wish they weren’t happening.

And then I
have to remind myself that things won’t always be like this.There will be better days and worse
days.

I don’t
know how to do this.And I don’t feel
that I deserve someone like this.

And
sometimes, when someone does something so unselfishly, because they want to and
not because of they have to or because of the recognition they’ll receive, it
makes you want to shout it from the rooftops.

Love is
not just a noun.It’s a verb.It’s more than a word.It’s an action.And sometimes actions speak louder than
words.

Monday, November 12, 2012

So, every
once in awhile, I move away from posts that are extremely personal, emotional,
and philosophical, to talk about the more practical aspects of being a patient,
with some old-fashioned research thrown in for good measure.

Electronic Medical Records

Recently,
the hospital that my rheum and other specialists are at, and the student clinic
where my primary care doctor is, moved to an electronic medical records system.

At your
first appointment after the system was instituted, you received an access code,
which allowed you to go online and access your medical records.You don’t have to, but for someone like me
who is chronically ill, the possibility of having my medical information at my
fingertips was very appealing.So I
signed up pretty much right away.

Until I
discovered that there was an IPhone App I could download, I did not realize
that the system I was using is actually of the “Vendor Created, System Hosted”
variety (Halamka, et al. 2008).This
means that a third party created the system and the health system I belong to
hosts it.

In other
words, Epic Systems, a company out of Wisconsin, created an electronic records
system, known as MyChart. This system
has been around since the late 1990s. Along with Halamka, et al. (2008),
Hassol, et al. (2004) and Serrato, Retecki, and Schmidt (2007) look
specifically at the MyChart system.

-I
get an automated e-mail when new results, messages, appointments, are posted.

-Unlike
before, both the hospital and the student health center can see records.Before, only one could see all records and
the other could not, which made things very tricky when you have a primary care
doctor at one and all your specialists at the other.This was a serious flaw in the old system,
which I am grateful has been fixed.

-Presumably
no more having to pay money to get your hands on your medical records and test
results.

Dislikes:

-I
can only see my records/history from AFTER the system went into effect.Presumably, the interface that my doctors use
allows them to see the entire health record, not just since the implementation
of the new system, but I am not certain of this, since I have never seen the
system from the other side.

-No
one, in terms of doctors, knows how to use the system, which has increased the
time of clinic visits by a significant degree.It was instituted in the summer and there is still a steep learning
curve, which I know has also been frustrating for the clinicians.

-If
there was some potentially devastating test result, would it get posted to the
health record that the patient could interface with?Or would it not be released until the doctor
delivered the news to the patient?

-I
don’t kn0w what every test means.I know
certain levels and things like that, but not every test.

-One
of my medications is not commercially available in the United States, and
therefore, was not in the database.I
was told the system would not allow the doctor to enter a medication not already
in the system.This seems like a huge
liability, especially as far as drug interactions go.

-There
are some inconsistencies.For one thing,
the prescribing doctor on most of my medications is incorrect.But there is no way to change things.While you can interface with the medical
record, as the patient, to my knowledge, you cannot manipulate it, even when
you find things that are incorrect.

In their
study, Hassol, et al. (2004) found that a third of people felt that their
medical record and information was not complete.Further, there was a distinct inability to
understand tests results, especially abnormal ones.Further, Hassol, et al. (2004) confirm my
worst fears that patients can see any and all test results, even ones that are
potentially devastating, before their doctor has had a chance to contact them
about them directly.

One would
hope that one benefit of having access to an electronic records system is that
there would be greater coordination of care across specialists for the same
patient.However, this has been
identified as one area that is lacking (O’Malley, et al. 2009).

This is
something I have noticed generally about my care, and something that I hoped
would be improved by this system.As I
suggested, now all of my doctors in the same health system have access to my
records, however, whether doctors put that information to good use is up to
them.Additionally, when I saw my PCP
last week, she was very frustrated because there has been a variety of contacts
(via phone and e-mail and through the portal) made between me and various
doctors’ offices in the past month, and my PCP was having difficulty finding
the last note she had made in my record when I saw her a month ago.

Negatives
on a broader scope include electronic medical records widening the healthcare
disparity based on race, as whites are much more likely to utilize these
systems than are blacks and other minorities (Goel, et al. 2011; Roblin, et al.
2009).Additionally, there are various
privacy concerns due to the potential negative effects of the wrong people
gaining access to electronic record information (Li, et al. 2011).

I have to
say that I like the ability to e-mail questions, refill requests, and requests
for making and canceling appointments online.It saves me the hassle of going through my phone to find the doctor’s
office number, of which I have many, and waiting on hold on the phone to talk
to a person.However, when doing things
via the portal, this then puts the onus on the doctor’s office to contact the
patient in regard to whatever message or request they have sent, rather than it
being the patient’s responsibility.

It may or
may not be surprising then that Hassol, et al. (2004) found that patients
preferred online communication the best, while doctors preferred telephone and
in-person communication in preference to online.

E-Prescribing

Even
before the adoption of the electronic records system was instituted in my
health system, prescriptions went paperless.Prescriptions are all electronic, so not only does the patient not have
a paper copy of the prescription, but if there is an error, the patient won’t
necessarily be able to catch it, because they don’t really get the opportunity
to view the prescription that gets put into the system by the clinician.

I have had
varying issues with this, as well:

-My
original Humira dose was totally wrong.It somehow got listed as being taken twice a week instead of twice a
month, necessitating the pharmacy to call my doctor to correct the error.

-The
prescription gets sent to the wrong pharmacy.This has happened almost every time, and has involved me needing to
contact the doctors’ offices to get the prescriptions re-submitted to the
correct pharmacy.Unfortunately, the way
my prescription insurance works, I can’t get all of my prescriptions from the
same pharmacy.The “normal” ones I get
at CVS, the Quinacrine I have to get from a specialty pharmacy that compounds,
and certain other special prescriptions I have to get from the hospital pharmacy.This system might be ideal for patients who
are able to use one pharmacy for all their medications, but it seems to me that
if you use more than one, it really complicates things.

-It
defaults.So for the Humira, when I was
trying to get the pre-filled syringe instead of the pen, it automatically
selects the pen and the nurse or clinician had to notice this and change it,
which didn’t happen, again necessitating contacting the doctor’s office
multiple times to make the change.

I am not sure
of the specific E-Prescribing system that is used by my healthcare providers,
but whichever one it is, I have noted above the various problems that I have
experienced.

While some
have suggested greater efficiency with E-Prescribing (Agarwal, et al. 2010; Grossman,
et al. 2012), E-Prescribing actually tends to take doctors longer than simply
handwriting them (Lapane, et al. 2011), and can increase, rather than decrease,
the amount of errors made that can have adverse consequences on patients
(Palchuk, et al. 2010).

The thing
I really don’t like about this system, with all of its flaws, is that there is
no way to get a paper prescription.Even
when the prescription keeps getting messed up.And there is no way to see this, because you never see what the physician
is putting into the system.I’m all for
technology, but to be so technologically dependent, even when there are clear
errors, is just plain annoying.

A lot of
problems in E-Prescribing occur when there is a lack of technical support
(Crosson, et al. 2011), suggesting that adequate training of healthcare workers
is needed, and adequate support needs to be provided when problems occur.

I’m not
trying to be a Negative Nancy here, but of course, all of this presupposes that
the patient has adequate internet access and is technologically savvy enough to
use the systems.And the doctors have to
be technically savvy, as well, which may make it difficult to learn a totally
new system while having a regular caseload of patients.

If your
healthcare providers haven’t hopped on the electronic health bandwagon yet, it
is only a matter of time.But given all
of the issues that I and previous research has noted, the bottom line is that
these systems are only as good as the people that created them and the doctors
and other medical personnel that use them.

These are
screenshots from my IPhone of the sign-in screen to my health system-specific
portal (left) and the actual interface of the MyChart capabilities
(right).

These
systems look quite different between the IPhone interface and the PC interface,
so I have also included screenshots of the sign-in screen (top) and interface (bottom)
as they appear on my PC.Without showing
too much of my personal health information, I wanted you to see all the various
things you can do with the portal.

* I’ve
excluded from analysis articles that come out of the UK and Canada, as their
healthcare systems, as they currently stand, are different from ours.

**For this
I looked specifically at research related to electronic health records and E-Prescribing,
rather than health informatics, in general, for which there is a large
literature.

About Me

In April 2008, at the age of 22, I was diagnosed with lupus and rheumatoid arthritis. The Getting Closer To Myself blog is about a lot of things in my life, but focuses on my experiences with illness, in the hopes that my story will help others. I also have several other blogs that I maintain about various other aspects of my life.